Challenges and improvements associated with transitions between hospitals and care homes during the COVID-19 pandemic: a qualitative study with care home and healthcare staff in England.

BACKGROUND: Care home residents transitioning from hospital are at risk of receiving poor-quality care with their safety being challenged by the SARS-CoV-2 virus (COVID-19) pandemic. Little is known about how care home staff worked with hospital staff and other healthcare professionals to address these challenges and make improvements to increase patient safety. OBJECTIVE: To gain insight into how the COVID-19 pandemic influenced the safety of transitions between hospital and care home. METHOD: Semi-structured interviews were conducted with care home staff and healthcare professionals involved in hospital to care home transitions including doctors, nurses, paramedics, pharmacists, social workers, and occupational therapists. Commonalities and patterns in the data were identified using thematic analysis. RESULTS: Seventy participants were interviewed. Three themes were developed, first, 'new challenges', described care homes were pressurised to receive hospital patients amidst issues with COVID-19 testing, changes to working practices and contentious media attention, which all impacted staff negatively. Second, 'dehumanisation' described how care home residents were treated, being isolated from others amounted to feelings of being imprisoned, caused fear and engendered negative reactions from families. Third, 'better ways of working' described how health and social care workers developed relationships that improved integration and confidence and benefited care provision. CONCLUSION: The COVID-19 pandemic contributed to and compounded high-risk hospital-to-care home discharges. Government policy failed to support care homes. Rapid discharge objectives exposed a myriad of infection control issues causing inhumane conditions for care home residents. However, staff involved in transitions continued to provide and improve upon care provision.

Residents transitioning between hospital and care homes: protocol for codesigning a systems-level response to safety issues (SafeST study).

INTRODUCTION: The aim of this study is to develop a better understanding of incident reporting in relation to transitions in care between hospital and care home, and to codesign a systems-level response to safety issues for patients transitioning between hospital and care home. METHODS AND ANALYSIS: Two workstreams (W) will run in parallel. W1 will aim to develop a taxonomy of incident reporting in care homes, underpinned by structured interviews (N=150) with care home representatives, scoping review of care home incident reporting systems, and a review of incident reporting policy related to care homes. The taxonomy will be developed using a standardised approach to taxonomy development. W2 will be structured in three phases (P). P1a will consist of ≤40 interviews with care home staff to develop a better understanding of their specific internal systems for reporting incidents, and P1b will include ≤30 interviews with others involved in transitions between hospital and care home. P1a and P1b will also examine the impact of the SARS-CoV-2 pandemic on safe transitions. P2 will consist of a retrospective documentary analysis of care home data relating to resident transitions, with data size and sampling determined based on data sources identified in P1a. A validated data extraction form will be adapted before use. P3 will consist of four validation and codesign workshops to develop a service specification using National Health Service Improvement's service specification framework, which will then be mapped against existing systems and recommendations produced. Framework analysis informed by the heuristic of systemic risk factors will be the primary mode of analysis, with content analysis used for analysing incident reports. ETHICS AND DISSEMINATION: The study has received university ethical approval and Health Research Authority approval. Findings will be disseminated to commissioners, providers and regulators who will be able to use the codesigned service specification to improve integrated care.

Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders' perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

Beyond trust: Amplifying unheard voices on concerns about harm resulting from health data-sharing.

Background: The point of care in many health systems is increasingly a point of health data generation, data which may be shared and used in a variety of ways by a range of different actors. Aim: We set out to gather data about the perspectives on health data-sharing of people living in North East England who have been underrepresented within other public engagement activities and who are marginalized in society. Methods: Multi-site ethnographic fieldwork was carried out in the Teesside region of England over a 6-month period in 2019 as part of a large-scale health data innovation program called Connected Health Cities. Organizations working with marginalized groups were contacted to recruit staff, volunteers, and beneficiaries for participation in qualitative research. The data gathered were analyzed thematically and vignettes constructed to illustrate findings. Results: Previous encounters with health and social care professionals and the broader socio-political contexts of people's lives shape the perspectives of people from marginalized groups about sharing of data from their health records. While many would welcome improved care, the risks to people with socially produced vulnerabilities must be appreciated by those advocating systems that share data for personalized medicine or other forms of data-driven care. Conclusion: Forms of innovation in medicine which rely on greater data-sharing may present risks to groups and individuals with existing vulnerabilities, and advocates of these innovations should address the lack of trustworthiness of those receiving data before asking that people trust new systems to provide health benefits.

Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers.  Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.